LA Half

Despite my lack of training, I finished the Los Angeles 1/2 marathon and I wasn't the last one across the finish line. Yay!  It was a lot of fun, especially because it was Halloween weekend and there were a lot of crazy costumes amongst the runners.  There was a group of Elvis runners pushing jogging strollers holding ice chests full of beer.  They were drinking while they were running.  I'm really not sure how they finished the race and they even finished in front of me! (should I admit that?)

Pre-race pictures

Downtown LA

Part of our Cure CMD team

I don't have any post-race pictures and if I did, I doubt I'd share them. :)  I did something to my foot this race - when I took my shoe off after the race it was swollen, red and painful on the top (and still is today).  Based on my Google diagnosis, I think I might have a stress fracture.  I'm not sure whether I need to have it seen by an orthopedic doc or not.  I guess I'll wait a few days and see if it improves.  Whatever the issue is, it better resolve by January because I have another half marathon to walk!

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Eric went trick-or-treating with one of his friends from school.  You can guess who is who.  

Jack's birthday is Friday.  So many thoughts and ideas in my head ... transforming them into something I can share with you will be the challenge.  As all my special needs moms know, birthdays are so, so bittersweet.  Stay tuned.

Home

We are home and settled back into the routine of every day life.  Most importantly, we are home where we have help with Jack.  I don't want to harp too much on how truly exhausting it is to travel 3000 miles with a ventilator dependent, essentially quadriplegic, almost thirteen year old, eighty pound child because the fact is - I choose to travel to St. Louis - I'm not required to travel there.  But, I don't think it's possible for most people to really understand the amount of physical work involved in traveling half way across country with Jack.  Jack does not travel in his wheelchair, he sits in one of the captain's seats in the van.  Therefore, when we stop for the night at a hotel, Mark has to lift Jack out of the seat and carry him out of the van, the whole time Jack is disconnected from his vent and I'm right there assisting with the transfer and hooking Jack up to his other vent once he is in his wheelchair.  This lifting of Jack alone is back-breaking.  Add to that the unloading and loading of his equipment and supplies - which requires two trips with a fully loaded hotel dolly.  I counted that on this trip - because we did it over three days each way and we also had a minor delay due to car trouble which required an additional, temporary hotel stop - we loaded and unloaded Jack and all his stuff 14 times!   I need to get a video of the loading and unloading process just to give you an idea of all that is involved. Mark says we look like a traveling circus.

I'll also not complain too much about having to provide all of Jack's care 24/7 for 10 days straight with no help because I know some of you who read my blog don't have nursing help and you provide all your child's care all the time.  However, I can tell you - I could never be Jack's full-time caregiver.  I'd be dead by now. Seriously.

My whole point being that even though I took a trip to St. Louis and I was away from the office for six days, I was NOT on a VACATION people!  (what I want to scream when people ask me how my "vacation" was.)

In any event, we made it home safe and sound, Jack is well and Mark and I are slowly recovering.  It takes us about a year to recover and erase from our memory the hell of this trip.  Just in time to do it all over again! :)

Okay, so we did have one "fun" day. The last day in St. Louis, the weather was beautiful, so Mark and I decided to take Jack to the St. Louis Zoo.  Jack didn't really enjoy it too much because it was windy and he was probably still recovering from the prior day's eye surgery.  Oh well, we made a valiant effort at trying to have some fun with Jack while in St. Louis.

Mark's awesome picture of us on the Merry-Go-Round. Granted, he was trying to get a picture of a moving target.

Lots going on over the next few weeks.  I'm walking the LA 1/2 in less than two weeks and I haven't trained one bit for the walk.  Not sure what I was thinking agreeing to do this knowing that I haven't trained like I did last year.  Then again, I'm only walking it - I'm not running it.  But, there is still a time limit, so I do have to walk with some speed.  Wish me luck!  

Jack's 13th birthday is fast approaching.  So much I want to share, but finding the time to put my thoughts to words (and maybe a video) - therein lies the challenge.  Hopefully, I'll come up with something that does justice to his reaching the milestone of being a teenager.  (can you believe that?!)

Thanks for checking in my friends.  Have a fabulous rest of the week! 

A Story of Compassion

Yesterday, I had a lunch date with Jack's neurologist. I'm fortunate that every year when we come out to St. Louis, she takes time out of her busy schedule to meet me for lunch.  She was seeing patients in the "Center for Advanced Medicine" ("CAM") building and Jack and I went there to meet up with her after she finished. Housed in the CAM building is the Siteman Cancer Center, a non-pediatric cancer center.  The CAM building is a large, modern, glass building with a huge lobby - it looks like a hotel lobby with a valet counter, information center, coffee bar and even a piano where a woman was playing music along with an older gentleman who was belting out "Danny Boy" as everyone milled about the lobby.  Jack and I had to wait awhile for Dr. C to finish seeing her patients and as I was sitting there, I did a lot of people watching.  I saw tired eyes and weary bodies of people being pushed in wheelchairs by husbands, wives, daughters, and sons because they were too weak to walk. There were people walking with canes, people carrying oxygen tanks and people who were obviously in the throws of cancer treatment.  My eye caught a man who was, I'd guess, to be in his mid to late 40s.  He was being pushed in a wheelchair by who I assume was his father.  It was obvious that he had some type of cancer of the jaw, neck or throat because of the incisions on his face.  He had a trach and sitting in his lap was a suction machine.  His eyes looked sad and distant.  However, as his father wheeled him past Jack - the man looked at Jack and then crossed his arms on his chest to show the sign for "love".  It was such a simple, yet profound gesture.  A gesture of compassion that required no words.  What an amazing way to end our week at SLCH - to experience the kindness of that man who felt a special connection to Jack and who showed love in the mist of his own suffering.  It was a very touching and memorable moment.

St. Louis

We arrived safe and sound in St. Louis on Monday.  It's been a fairly stress-free week being that we are only seeing one doctor this time around.  Jack had his eye surgery today and only one eye needed to have the laser procedure done to relieve the pressure.  The ophthalmologist did mention that it may be time for new lenses because he's grown and things have changed inside the eye.  We have a post-op appointment tomorrow and we'll talk about everything then.  I have a feeling these once a year trips to St. Louis (rather than every other year) are going to become the norm for us.  I can say with certainty that our next trip out here will be in a different vehicle.  It's just too much for Jack to sit in a seat for 8+ hours without the ability to change his position.  And, it's just too difficult for Mark to lift Jack in and out of the van anymore.  If only I were a rich man, then I'd buy me one of those houses on wheels and travel in luxury to St. Louis.  If only ....

Jack was very popular in Same Day Surgery today - lots of visitors stopped by to see Jack.  It's so nice that so many people remember Jack and stop by to visit with him and me.  I was also able to request - and get - my favorite anesthesiologist who is so good with Jack and who knows Jack very well.  I can't say enough how much I love St. Louis Children's Hospital.  Just walking around the Washington University Medical School/Children's Hospital campus is such a neat experience - the place just has the  feel of academia and excellent medical care!

Some pictures from our week so far ....

The view from the deck of our friends' house  

My handsome and happy Jack. 

Where I've eaten every day since we've been here 

(at least once a day, sometimes twice a day!)  

Definitely a place of "advanced medicine"

the place we come for

22 Years

Today Mark and I celebrate 22 years of marital bliss. Not bad considering that for 21 of those years we've been parents of children with special needs. Although, technically, we didn't find out Hilary was deaf until she was a year old. So, we always say, we had 2 "good" years of marriage.  The key to our lasting marriage - despite the overwhelming odds against it lasting - is HUMOR.  If nothing else, we both can still laugh.  And, anyone who knows Mark knows that he is darn funny.  He's quiet- but funny!  Little known fact - Mark was a theatre major in college.  He's a great actor with a great sense of humor. I've encouraged him to get back into acting by joining a community theater.  Unfortunately, his work schedule just doesn't allow it right now. But, maybe some day ....

The following pictures are really lousy for a couple of reasons.

1. They are old (22 years old, to be exact).
2.  We didn't have money to hire a professional photographer when we got married - so the quality is crappy to begin with.  But, I thought I'd share them anyway.

The priest in the left of the picture (who you can only partially see) married my mom and dad (and taught both my dad and me in high school). The other priest - he was also one of my high school teachers.  He was a friend of my dad's growing up and he said my mom's funeral.  He's awesome.  If all priests were like him, I might still be going to church.  (But, that's a whole other topic!) 

Time for me to shut down the computer and finish packing.  We're hitting the road tomorrow and 5am comes early.  

Aaaahhh . . .

So much to do and so little time.  T minus 2 days before we leave for St. Louis and I'm probably more ill prepared than I've ever been in the past. Part of me just doesn't want to go and the other part is really looking forward to seeing my St. Louis friends, savoring a pumpkin muffin from the St. Louis Bread Company (aka Panera), and breathing in some cool, crisp Fall weather.  But the laundry and packing that needs to be done in a short time frame has kicked the stress level up a notch.  If only that thing called a "job" didn't suck up all my time.  But, alas, whenever I feel overwhelmed with too many things to do, I just head over to my friend Christy's blog and she keeps me in check. (Christy is one crazy, busy lady and she still finds time to run marathons.  She's amazing!)

When given the choice of staying or going, Eric elected to not go with us to St. Louis.  It was a difficult call for him because he enjoys seeing Peggy, but in the end, he just couldn't face the three days in the car (each way).  We decided to make the trip over three days instead of the usual two days. It's just getting too much for Jack to tolerate 12+ hour days in the car.  We'll spend more days on the road (6) than in St. Louis (4), but we're hoping it will be a more enjoyable tolerable trip doing it at a slower pace.  We'll see.

Last Sunday, Hilary turned 21 years old.  Seriously, how is it possible that she is 21 years old?! She was just a baby, darnit!

If you recall, when I decided to re-enroll Jack in school, I took the position that I would keep my expectations low.  I have not been disappointed.  The first quarter of school is finished and Jack has received ZERO hours of the OT, speech and life skills/academics set out in his IEP - an IEP that was signed in early August.   At the end of the day, whether or not Jack goes to "school" will have no impact on his future and, for this reason, I try not to get too upset with the lack of compliance by the school district.  But, it's this lack of compliance that caused me walk away from the hassle of it all three years ago.  And, it also comes down to what is right and what is wrong and the actions of the school district are just wrong.  I could file a complaint with the Department of Education, they'd find the school district to be out of compliance with the IEP and mandate that the missed hours be made up.  However, I've been there, done that and you see how much of an impact it had on the school.  At this point, I'm just not sure if I'm ready to play hardball or say WTF.

Adding insult to the injury, I received this in the mail today:

Jack's very first report card.  First of all -- I still can't wrap my head around the fact that Jack is in 7th grade!  I've never met the "Counselor" and I have no idea what "P" means.  "Pass"?  I really didn't need to receive this report card. It contains absolutely no meaningful information and it's just a reality check that makes me sad. Pfft...

Anyway .... I'll do my best to update our travels to St. Louis. Thanks for checking in.

Family Weekend

This weekend was Family Weekend at Northern Arizona University.  What used to be called "Parent's Weekend", is now for the entire family.  Mark, Eric and I went up to Flagstaff for the weekend to see Mary. Hilary didn't want to come  - she quite enjoyed having the house to herself for a few days, and Jack spent the weekend at Ryan House.  I'm still not 100% comfortable leaving Jack at Ryan House - this is only the second time he has been there for the weekend without us staying with him.  Jack's nurses checked in on him for us and when we arrived to pick him up this afternoon, he was doing great.  He's very tired tonight though and I can't get a read from him as to whether he's okay with staying at Ryan House, or whether he is mad at us for leaving him there. It's certainly not an easy thing to do, but I will admit, it's really nice to get away for the weekend and have a break from all of Jack's care.

It was good to see Mary and it seems that college life is treating her well.  Mary has decided that she wants to be a doctor.  I think she's read my "Dear Future Physician" letter, so she knows what's expected of her! :)  She has signed up to be a volunteer in the emergency room at the hospital in Flagstaff - which is a Level I trauma center.  It will give her the opportunity to see some "good" stuff and find out if she has the stomach to be a doctor.  I too spent my weekends volunteering in the emergency room of a Level I trauma center during college.  Things didn't quite go according to plan for me, as I ended up on the wrong side of the white coat.  I'm optimistic that things will work out much better for Mary!

___________________________

Ready to cheer on the football team

NAU isn't a powerhouse football team, but it was still a fun game to watch

Mary and her cousin, Kelsey at the game 

Eric isn't a big football fan  - he'd rather read his Lego Ideas book

The girls found the game about as interesting as Eric and left early 

Today we walked around downtown Flagstaff - which has a lot of really neat little shops.  It reminds me a lot of Estes Park, Colorado - but, not quite as upscale.

Old Route 66 runs through downtown

There is also a lot of wall art on the buildings 

______________________________

As a follow-up to my last post, the other part of the email from the media relations person at SLCH said this:

It would be a privilege to highlight Jack on our Facebook page, as well as on the main hospital website. Will you be in St. Louis soon for a follow-up appointment?  If so, we'd love to meet you in person and interview you and Jack for a profile. 


So, yes SLCH wants to share our story. The problem is, when I wrote the email, I truly wasn't "fishing" for our story to be told.  I was using Jack as an example of the many children like him who SLCH cares for.  There are many local children who have the same "profile" as Jack that they can feature on their Facebook page and website.  While I encouraged her to profile a local child, I also let her know that I would very much like for her to meet Jack in person and I let her know when we'd be in town.  I haven't heard back from her, so I'm wondering if the fact that I didn't jump at the opportunity to be the featured story, made her lose interest. I guess I should have just said "yes" and left it at that. Oh well ... regardless, I made my point and it was heard.  What SLCH does from here, I don't know.  Que Sera, Sera.

Speaking of St. Louis, we leave weekend after next and I'm not even close to being psychologically ready for the trip. It is such a long and brutal trip.  Mostly for Jack.  But, we do what we have to do because I'm stubborn as hell and I won't let anyone else but the St. Louis docs manage Jack's care.  There will no doubt come the day when we will no longer make the trip - for any number of reasons.  But, until then .... onward!

Have a great week my friends.

The Silent Child

One of the statements that Anne made in her video that really hit home with me was this:

As a person with a disability, you are often ignored in society.  If you are able to speak, you can at least have a come back, defend yourself.  


I would also add that if you are able to speak - you are noticed.  It's the disabled or sick child who can talk that is chosen to be the "poster child". Their stories are shared on television, websites and Facebook pages - stories of children who are fighting cancer, who have incurable diseases, who have received new hearts and lungs, or who are pioneers in the use of new medical technology. I recognize that "feel good" stories with cute and articulate kids are both good for publicity and heartwarming for people to hear. They are valid and important stories that should be shared.  But, what about the cognitively impaired child who cannot talk?  Their faces and smiles need to be shown and their stories need to be shared as well. The lack of recognition of the "silent child" really gets to me sometimes.  While I completely understand why it's difficult for people to connect with a child like Jack, it's still hurtful that he is often ignored.

I "like" and follow St. Louis Children's Hospital on Facebook.  Stories of the children that SLCH cares for are shared on a daily basis on its Facebook page.  Several months ago, I sent an email to SLCH's media relations person offering my perspective for her consideration.  Here is a portion of what I wrote:

I'd like to challenge you to also recognize the stories of children like my son.  A child who isn't a "poster child" because of the disease that has ravaged his body and stolen his ability to communicate.  A child who will never be cured despite the top notch care provided by SLCH.  I'd like to see someone write an article, share a story - even a picture - of the child who isn't necessarily a "success" story, but who represents another population of patients that SLCH provides care for - the silent, chronically ill, developmentally delayed child.  A child who is equally as beautiful, and whose story is equally worth sharing.  While there is no question that the physicians, nurses and staff at SLCH recognize the value of our children's lives as evidenced by the compassionate care they provide, I would love to see this recognition extend beyond the four walls of the examination room.  Every once in a while it would be nice to see a story about a child like mine.  A story about how the care provided by SLCH - while it may not cure his disease or save his life - it does enhance his quality of life, for however long that may be.  It's not a sensational story, but it's ours.  And, I believe, it's your story too.  


I received a very nice response, that provided in part:

I couldn't agree more.  Caring for children like Jack is a critical part of what we do, and provides tremendous fulfillment and inspiration to the nurses, doctors and therapists who follow these brave heroes every day. 


As the parent of a "silent child", I feel strongly that I need to raise awareness whenever I can.  It's important for people to know that just because a child can't talk, doesn't mean he has nothing to "say".

A Video: Life With CMD

The Chairwoman and founder of Cure CMD, Anne Rutkowski, recently participated in a video with her daughter where she talks about life with a child with CMD.  Her daughter is about the same age as Jack, has the same subtype of CMD as Jack and, like Jack, her daughter has cognitive impairments that affect her ability to communicate. Anne made several points in this video that really resonate with me - which I'll share more about in my next post.  Anne is an emergency room doctor and one of the brightest people I know. When she talks congenital muscular dystrophy - she uses big words and talks way over my head!  The thing I liked about this video is that it's Anne the mom, not the doctor, the advocate or the trailblazer that she is.  The video is almost 7 minutes long, but, hopefully some of you will take the time to watch it.

9-11 Memorial Prayer

Remembering those who lost their lives on this 10th anniversary of 9/11.

The following was written by my husband, Mark.

(click to enlarge)

Eric-isms

I realize it's been awhile since I've posted any Eric-isms.  There is never a shortage of Eric-isms, I just haven't been very good at writing them down.  Here are a couple of recent ones:

"Hilary is the only person I know who doesn't think I'm awesome."  

"In my opinion, the scariest thing in the world is an angry mom."  

_______________________

Thanks for all your thoughtful comments on the loss of Rylie.  Hilary already put the dates and times for adoption at Petsmart up on the refrigerator. However, I'm not ready to jump right in just yet - at least not until we get back from our trip to St. Louis.  I'd rather not get another dog at all, but I don't think I'm going to win on this one.

Now that "Fall" is here, so are the school-born sicknesses. Eric has his first case of strep throat and Mary texted me this week with "Mom, I'm already sick."  We've been so lucky with Jack because he hasn't been sick for over a year (knocking on wood).  I'll be curious to see if he gets sick once the teacher and therapists start coming out to the house and bring all the school germs with them.  Speaking of school, we have Jack's IEP in place, but don't yet have all the people to provide the services.  Looks like it won't be until at least mid-October (after Fall break) before we have a team put together.  Good thing my expectations were low. 

Hope you all have a fabulous weekend. I'd just like for the temps to get below 100.  It's Pumpkin Spice Latte time at Starbucks, but I just can't get into the Fall coffees when it's 110 degrees outside! The weather is definitely something I'm looking forward to in St. Louis (along with seeing all our awesome friends).

Cheers!

The Thing I Don't Like About Having a Dog ....

 .... is that they die.

It's no secret that I'm not an animal person, but I did think our dog Rylie was a pretty sweet dog.  If I had to have a dog, she was the perfect one for me. She had a quiet, gentle disposition.

Sadly, she died on Friday night, at home.  Mark was out of town until today, so I had to handle the whole thing and it was rather traumatic.  Long story short - I ended up taking her to the vet, a bunch of tests were run and it was determined that she was dehydrated and something was wrong with her liver. However, there wasn't anything this particular vet could do until next week - when we could have some additional testing done. She sent us home after pushing fluids into Rylie and told us to come back the next day for more fluids (this vet didn't have overnight services).  Rylie died two hours after we brought her home.  Ugh!  The one good thing is that it truly was a very peaceful passing and the kids were with her.  I seriously don't ever want to go through that again. Thank God for my friends Anne Marie and Paul - they are "animal people" (they have lots of animals) and they helped me get Rylie to the vet and back home.  Thankfully, they were with us when she died, or I would have freaked out.  We suspect Rylie had been sick for awhile and it caught up with her all at once and she crashed fast. There really wasn't anything the vet could do based on the condition Rylie was in at the time we took her in.

Lots of tears are being shed around here this weekend.  Naturally, there is talk of the next dog we are going to get. But, I don't think I can do this again - and, it will happen again. It's the nature of having pets.

She was Hilary's best friend,

Eric's buddy,

and Jack's protector

Eric slept with her collar last night :(

and, Hilary drew this picture 

So much for an enjoyable three-day weekend.

New ENT

We saw a new ENT today - one who trained under our St. Louis ENT.  Two words: Love him!

It was so refreshing to encounter a physician who completely understands why we travel to SLCH, who understands the deficiencies this City has when it comes to coordination of care for complex kids like Jack, who treated Jack like a human being, and who has a great personality to boot. When he came into the room he said "I finally get to meet you!"  (Apparently, our St. Louis ENT had already told him about Jack with the hopes that one day we'd make an appointment to see him.)  I was almost giddy when I left the office - just knowing that I finally have a local ENT who can take care of acute issues for Jack and not feel like I'm settling when Jack receives care here versus St. Louis.  He did a flexible scope in the office and didn't see any granulation tissue and, in fact, he said Jack's airway looks great. Jack hasn't had any more episodes since the last one, so who knows what the issue was.  I think Jack just likes to keep us on our toes.

A relevant fact for the day:

The Phoenix metropolitan area has a population of over 4 million people, yet has only three pediatric ENTs in the entire valley.  There are a lot of ENTs who see both kids and adults, but there are only three who care solely for kids. (One who trained under Jack's St. Louis ENT, one who trained under the airway guru, Dr. Robin Cotton and one who saw the need and was the first pediatric ENT to set up shop here).  That, my friends, is a problem.

In any event, today goes down as a good day!

Happy Birthday to My Nieces

Because I know they check the blog every once in awhile, I wanted to wish my nieces, Bridget and Kelsey (who are sisters) happy birthdays!  Bridget's birthday is today and Kelsey's is tomorrow.  

Below are two of my favorite pictures of my nieces.  Their personalities shine through in these pictures ... or at least one of their personalities does.  Can you guess who? :)

(Bridget, Kelsey, Shannon)

(enough already with the pictures)

(hey, whatcha doing with my pacifier?)

These pictures were taken close to twenty years ago!  I don't even know how that is possible.  Today, Bridget is in her first year of law school at Rutgers School of Law and Kelsey is finishing up her degree at NAU.  These pictures were taken (by me) before I had kids.  This was a time when having kids meant diapers, pacifiers, bottles, formula, Gymboree and well checks ... not cochlear implants, IEPs, DMEs, g-tubes, vents, trachs and PICUs.  I sure miss the naivete of those days. 

Happy Birthday girls - I hope your birthdays are (were) extra-special! 

Independence Day

Today was a day of independence ....

Hilary doesn't drive, so she has to take the City bus to get to school.  She had to leave the house at 5:30am to get to school in time for her 8am class.  The ridiculous part is that the school is 20 minutes away if she were to drive there (incentive for learning to drive??) But, she managed to get up, get out the door, walk to the bus stop, make two transfers, arrive at the school, attend her three classes and do it all over again to get back home.  She walked in the door at about 3:45pm. A long, hot day for her, but she got where she needed to be, on time and all by herself.

Mary is all moved into her dorm at NAU and is ready to embark on her new journey as a college student, all by herself.

Eric had to walk home from the bus stop after school today because Mark and I were with Mary.  I was a nervous nellie about him walking home without an adult, but it's less than a quarter mile from the bus drop off to our house and he doesn't have to cross any streets.  I told him to make sure he came straight home - no dawdling.   This was Eric's first time walking home from school all by himself, and he arrived safe and sound!

Our kids are growing up and becoming independent. It's a good thing, but bittersweet at the same time.  Oh well, we don't ever have to worry about not being needed - we've always got Jack! :)

Mary walking Eric to the bus stop before she leaves for college

(I think she's going to miss him)

Getting her dorm room set up

Hanging out with the Lumberjack 

(school mascot)

All Is Well

I received the summary of my "Executive Physical" in the mail today (as a follow-up to the phone call I got from my doctor two weeks ago).  Apparently, my diet of chocolate and beer is working for me.  According to the report, my cholesterol is very good, my triglycerides are excellent and, based on some special CT scan they did, my arterial age is 39. Not bad, eh?  I did find out why I'm so tired all the time - I'm anemic.  I started taking an Iron supplement and I already feel like I have a bit more energy.  I'm not ready to run a 1/2 marathon yet, but maybe some day.  By all accounts, I should live to see another day.  Yay!

I got Jack an appointment with a new ENT for next week.  The guy is new to the group (and the fourth doctor I will have seen in the group since we moved here) and he trained under Jack's St. Louis ENT - which is how I got his name.  I fully intend to name drop - hopefully it will earn us some brownie points with the guy.  I'm cautiously optimistic.  The only bad thing is that he shares office space with ENT number 2 - who I departed ways with on not such good terms.  I just hope I don't run into the guy while we are there. Then again, I don't really care if I do.

Tomorrow is the big day - we take Mary up north to attend college at Northern Arizona University.  She's about 75% packed and no where to be found this evening.  I swear, I haven't seen her for more than an hour since she got home from Ireland at the end of June. She's either at work or with her friends or cousins.  Sadly, she is ready to spread her wings and get the heck out of this house.  I can't say I blame her.

Thanks for checking in on us ... all is well.

My Day

Get up at 6:30am and drive forty-five minutes to my Aunt's house.  Drive my Aunt to Cracker Barrel and enjoy a nice breakfast with her. Drop my Aunt back at her house.  Drive home to pick up the girls to take them out clothes shopping for college (because, you know, they don't have enough clothes already).  Spend a couple of hours shopping. Take the girls out to lunch and then head home.  Once home, clean bathrooms, do laundry, straighten up the kitchen, suction Jack (after washing my hands, of course), feed Jack lunch, more suctioning.  Around 3:30pm, start getting Jack ready to go out to meet my family for a sending-Mary-off-to-college dinner.  Get Jack in his wheelchair.  Notice Jack turning purple.  Bag Jack with oxygen until he is pink again.  Hook Jack back up to his vent and watch him turn purple again.  Pull out Jack's trach while he's still in his chair to see if he has a plug.  No plug.  Put the trach back in and continue to bag Jack.  Change out the vent circuits because the Peep valve is making a strange noise.  Hook Jack back up to his vent and watch him turn purple again! See Jack look at me with eyes that say "please do something ... I'm dying here" (literally).  Bag Jack again and decide that Jack is not going out to dinner with us.  Get Jack back in bed and lay him down flat.  Color starts returning to his face.  Mark and I look at each other and are thinking ... want to flip to see who stays home with Jack and who goes?  Decide that I should go because it's my family.  I send Mary ahead with Hilary and Eric otherwise we are going to be late to the dinner that I planned and asked everyone to come to.  I wait about fifteen minutes to make sure Jack is going to be okay.  I look at Mark and say "it's pretty bad when you are afraid to be home alone with your own kid".  I leave to meet my family for dinner, trying to hold back the tears as I drive.  Have a nice dinner with my family, keeping a close eye on my phone the entire time just in case Mark calls.  Arrive back home.  Jack is pink and happy! Vacuum the floors, do another load of laundry, get Eric in the shower and then to bed.  Exercise thirty minutes on my stationary bike.  Get Jack fed, suctioned and ready for bed.  Mop floors.  10:30pm .... sit down!

Yep, I'm definitely living in the moment these days!

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As for what the heck is going on with Jack - I haven't a clue.  Worse yet, I don't have any confidence that there is a doctor in this City who can help me figure it out.  But, I have to try. I'm starting with the ENT because I want to rule out any granulation tissue at the end of his trach tube given that his episodes appear to be positional.  If it's not that, I guess we'll see the pulmonologist next.  If I don't get anywhere here, we'll be in St. Louis in seven weeks and maybe someone there can help us.

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Pictures from dinner .....

Have a great week everyone!

In the Moment

Now that I have "officially" committed to participating in two 1/2 marathons as part of Team Cure CMD, I decided it was time to get my running shoes on and put in some miles.  I'm going to walk the LA 1/2 again (in October), as well as the Phoenix 1/2 in January.  This evening when I was out on my walk/occasional run, I made an observation.  I noticed that I look down, not ahead when I walk.  I remember my sister pointing this out to me on one of our training walks last year.  I do a lot of thinking on my walks and I'm very focused on what's in my head, not where I'm heading.  I'm not so much looking down, as I'm looking inward.  It's safer.  I tried to force myself to look ahead on my walk and, to be honest, I really couldn't do it.  I felt vulnerable.  I think that's indicative of how I've come to live my life.  I stay safely tucked away in my own little space, head to the grindstone, inward focused .... just living in the moment.  It's a matter of survival really.  Some days it's all you can do to get through moment and, then there are those days when you just want to savor the moment.  The here and now is enough.

I used to approach life eyes wide open, full steam ahead.  Now, I don't have the fortitude to think too far into the future.  I used to be such a planner - always with a carefully mapped out destination.  You see how well that worked for me.  The last twelve years have definitely been a lesson in humility.  This evening I realized how I have changed.  For better or worse, I find myself living safely in the moment with little desire to look ahead to the future and what it may bring.

Just an observation.  

Weekend Pictures

Jack had a great weekend at Ryan House. We met another wonderful family who was there with their five children.  Three boys all around the same age as Eric - which made for a great weekend for him.   Their youngest two children have a degenerative disease, so they were definitely in need of some respite.  The mom and I and my friend all went to see "The Help" on Saturday night. Great book and equally great movie.

Eric hanging out in the TV room (where a lot of Wii was played)

Jack and volunteer Greg having fun in the pool area

Eric loves the pool at Ryan House because he can touch the bottom anywhere in the pool

That's all I've got.  Not much going on this week. Next week will be a busy one, so I'm just going to enjoy the calm before the storm.

Have a great week everyone!

Random Update

☞ The boys got haircuts on Saturday 

(don't have a good picture of Jack yet)

☞ A month after I dropped off Jack's enrollment forms, I finally heard from the school district.  Someone called to tell me the date and time of the meeting.  Didn't bother to check with me to find out if my schedule was clear - just set the meeting.  I was tempted to tell them I wasn't available just so they'd have to rework all their schedules.  But, I decided that wouldn't be the mature thing to do and it wouldn't serve Jack well for me to make.a.point. So, I just closed my eyes, took a deep breath and repeated several times "it's not about me, it's not about me".  Then picked up the phone and told them I'm available.  I do need to call and make sure that our first meeting isn't the actual IEP because I'm not sure how they can have an IEP meeting for a child they have never met or evaluated.

☞ Tonight when Eric was getting ready for bed, I asked him if he had brushed his teeth, he gave his typical automatic answer of "yes". When I told him that he, in fact, had not brushed his teeth, he looks at me and says "you are the only one who can crack my nut."  In other words, I know when he is lying.  He should know by now that nothing gets past mom!

☞ I'm putting together a team to run/walk the PF Changs Phoenix 1/2 marathon in January 2012 to support Cure CMD.  If you are local (or even if you aren't) and want to join us, let me know.   Anne Rutkowski (founder of Cure CMD) and her husband plan to come over from Los Angeles to participate. Should be lots of fun!  I haven't decided yet if I'll be able to participate in the LA 1/2 in October -- I'd like to, but don't know if I'll be up for it because I've done little to no training since the last 1/2.

☞ We are heading back to the Ryan House this weekend.  Jack hasn't been since January.  By the time we got around to scheduling our summer weekends, they were full. So, this is our first opportunity since the first of the year.  We now have a weekend a month scheduled through the end of the year.  Because it's been so long since Jack's last visit, I'll be staying with him this time.  It's not much respite for me when I have to stay there, but I'm just not comfortable leaving him to fly solo (without his mom) the entire weekend.

☞ Jack is still having random periods of respiratory distress.  It seems to happen mostly when he's in his wheelchair.  I'm convinced that it's because he's not being adequately ventilated either due to his cuff not being inflated enough or he needs his vent settings adjusted up.  It's a hard call when it comes to his cuff because if you fully inflate it, he loses his voice and we don't want to do that to him. But, at the same time, we need to make sure the vent pushes the air into his lungs and not up and out through his mouth.  He needs a vent check and I just need to suck it up and take him to see his pulmonologist.  I just know he'll want to do a "sleep study" (and I use that term very loosely considering we are talking Phoenix and not St. Louis).  It's times like this that I wish we still lived in St. Louis.

☞ I made myself a doctor's appointment for a complete physical (because I'm always tired as hell).  The last time I saw my primary care doctor was in 2003.  He asked who I had been seeing in the interim. I told him no one.  His response - "you don't do doctoring?" (if he only knew!)  I passed the EKG/stress test with flying colors.  But, based on the results of their hearing and vision tests, I think I'm deaf and blind.

☞ Due to the hard work of my dear friend Sarah, Children's Hospital of Orange County (CHOC) has signed up for the Touchstones of Compassionate Care program and will be implementing it hospital-wide for all of its doctors.  Very exciting news.  One hospital at a time - we will make a difference.

☞ Mary moves into her dorm in two weeks. :(

☞ Hilary starts classes at our local community college in two weeks. :)

☞ Random picture:

(Doesn't everyone have trach tubes just lying around on their counters along with the mail?)

☞ Words of wisdom

If you want others to be happy, practice compassion.  

If you want to be happy, practice compassion. 

This Kid

THIS KID ...

scared the bejesus out of his parents today!  When Mark showed up to get Eric at the bus drop off ... Eric wasn't there.  He didn't get off the bus.  Panic set in.  After a flurry of phone calls, it was discovered that Eric failed to get off the bus at his stop because he was "in the back of the bus with his friends working on his homework".   Grrr!  Mark's exact words to me were "I'm going to kill him!"  Lest you think that Eric is the high compliance, studious type and how could you possibly get mad at him for missing his stop because he was doing his homework!  Let me assure you that the only reason he was doing his homework on the bus - hurry up style - was because he thought he'd then have time to get on his DS the minute he walked in the door.  Ah, the best laid plans.  I asked Eric what went through his mind when he realized he missed his stop.  His response ... "Dad is going to kill me!"*

The really sad part is how we parents immediately go to the worst case scenario when we don't have our children in our sight.  I hate it.  I hate the fact that today our kids have to be tethered to us for us to feel safe.  But, that's the reality of the world we live in.  In any event ... Eric is fine and if he's smart, he'll make sure he doesn't miss his bus stop again!

*Mark caught up with Eric at the next bus stop - a school about 5 miles away!

THIS KID 

is giving me grief and he doesn't even know it.  We found out this week that his two-day a week nurse who is very good is leaving.  This having to constantly worry about "child care" is so hard.  You shouldn't have to worry about it when your kid is almost thirteen years old.  It just bums me out that we have to orient yet another nurse and then decide whether this person is not only competent to care for Jack, but also someone I don't have to freak out about having in my house when I'm not home.  I'm growing weary of the relentless worry that goes along with having to depend on other people to keep my child alive.  (Angie -- hurry back!)

And, finally ....

THESE KIDS

are both in desperate need of haircuts!  All I need is about six more hours in the day to get it all done. 

But, at the end of the day ... it's all good!

Thanks for checking in my friends.